I realize I rarely mention my kids, but I decided to mix it up tonight. Although I started this site in Feb 2004, I don’t remember mentioning the pregnancy and birth of my youngest in those early conceptions. (Ha..conceptions..pregnancy..sigh) To sum it up, I was pregnant and gave birth. It was fun. Especially the “Omen” marathons in the hospital, thanks to having a baby close to Halloween.
Anyway, on that last day of the hospital stay, I woke up from a brief nap after the resident pediatrician came in the room. Without much of a pause, he hit me with a relative brick wall of information that my post-pregnancy, hormone raging self found difficult to process: my son lacked a soft spot in his head. Now, honestly, I had no idea what the implication would be of this lacking soft spot. So naturally, I asked. I’m a curious person after all. The pediatrician told me in a matter-of-fact manner “Well, it could mean his skull is prematurely fused, which means he’ll need to see a neurosurgeon and have surgery.” And with that, he left the room. I was floored, trying to grasp what he had told me. “Newborn” and “surgery” did not mesh well in my head. “Neurosurgeon”? Really? I did the only thing I COULD do; I broke into sobs. At that point, the nurse walked into the room, clearly alarmed that she had a postpartum sobbing woman on her hands. I explained to her why I was crying and what the pediatrician had said to her. She got quiet and said “Oh…he wasn’t supposed to tell you like that.” I picked up on the context there: clearly, they had known about the issue before side-swiping me with it. The nurse told me that yes, they did know. But since my son had been “salad-spooned” (i.e., they used the forceps), they were unable to tell if he had a fused skull or if it was merely misshapen due to the spoon action. The only thing I could do was wait to see his primary care doctor the following day. That day came slowly for me, but our doctor was really on the ball with things. He sent us for an initial xray to determine if there was in fact a closure. I wanted to cling onto the hope that it was just the salad spoons’ fault, but there was an actual closure in the skull. The condition is called craniosynostosis, and my son had two types: sagittal and metopic. After the xray, we were referred to a neurosurgeon, who sent us for the more thorough CT scan. Lovely thing about getting a CT scan for a child — you can’t feed them before hand. Oh yeah, and he was an infant, and we all know all they do is eat, poop, and sleep. Take one away and that makes for a VERY irritable infant. And of course, being that the CT scan was taking place at a hospital, the wait was horrendous. So I sat there with an increasingly irritable infant, fielding all sorts of looks from fellow parents. The best is when one of them would say “He sounds hungry”, as if I was able to fix this. I got to the point where I was ready to explode and say “No shit he’s hungry!” when we were finally called back for the scan. Now with a CT scan on an infant, they need to knock the child out to run the test properly. The staff produced a lovely pacifier dipped in anesthesia, which my son gobbled at ferociously. Unfortunately, once he realized it was most definitely NOT food, he was more upset than ever. The nurses told us it would take a few minutes to kick in. Not my child. Not when he was hungry. This tiny infant FOUGHT OFF the anesthesia. Just as his head would start to tip in that infant-hapless fashion, he’d snap back up, eyes wide. I’m not talking for a few minutes, but for a good amount of time, shocking us and the nurses. He finally had to give in to it, and was whisked off to the CT machine. There was something surreal about seeing his tiny unconscious body in the belly of this gigantic, unfeeling machine. It was overwhelming and, at the time, the most difficult site I had to deal with. The scan results confirmed the extent of the fusion in his skull, but it also uncovered another surprise – a tiny cyst on his tear duct called a nasolacrimal duct cyst. It was blocking his breathing, causing his blood oxygen levels to drop. I had to sit next to his recovery bed with an oxygen mask pointed in the general direction of his face. And as much as he fought the anesthesia, he was slow to come out of it, so he was kept overnight in the hospital.
After his release, we met up with an ENT specialist. Before the surgery on his head was done, the cyst needed to come out to prevent any potential complications. This surgery would be a fairly easy one. They would remove the cyst, and place a very tiny tubing in the tear duct to keep it open. The tubing would then be removed a few months down the road. That surgery took place prior to Thanksgiving of that year. His head surgery was scheduled for the first week in December. Being the type of person I am, I needed to read as much as possible about the surgery. I don’t know if it gives me some semblance of control of the situation, but I feel better knowing what I’m getting into. Of course, the disadvantage was that I KNEW what was involved in the surgery and I was incredibly freaked out and shaken over it. (I don’t handle blood well. At least, not other people’s.)
In the midst of all these constant doctor appointments, I was still trying to grapple with a deluge of emotions. I remember looking at the major parenting/pregnancy sites, hoping someone else out there would be going through or had gone through this. There had to be SOMEONE. It’s not a ridiculously rare condition. And yet, I couldn’t find anyone on those sites mentioning this condition. The one emotion that constantly flooded me was guilt. No matter what the doctor told me, I felt responsible for this condition. I thought surely I had done something wrong or failed to do something in the pregnancy to cause this, as neither me or my husband had any history of this in our families.
After the tear duct removal surgery, the head surgery was just a matter of weeks. When that morning arrived, I had to try really hard to keep it together. Handing him over to the nurses was so incredibly difficult. It was putting up a brick wall in front of that maternal instinct to protect him. For the next several hours, I was going to be out of the equation and there was nothing I could do about that.
Sitting in the waiting room, time crawled by. I wanted to know my son was ok. I wanted to SEE he was ok. Finally, we got paged to the consult room, where we were told the surgery went well and, as soon as he was moved into a room, we could see him. More waiting, thankfully not as long though.
When I walked into his room, I realized no amount of researching could prep me for that image. His tiny 5-week old self was laying peacefully on a hospital bed, but the head had a turban-like bandaged wrapped around in and there were so many tubes going every which way. We were given an overnight room as he was in the ICU area for one night. My husband and I took turns that night: one of us would sit in the chair next to his bed, while the other attempted to sleep in the overnight room. (Although, my husband had no issues sleeping thanks to his 3rd shift schedule. I, on the other hand, had actually pulled an ab muscle during delivery, and laying down in a bed was a tremendous source of pain.) After ICU, he was moved up to a room on the neurology floor for a few days and then was finally able to go home.
Over the next two years, we would have followup appointments with the neurosurgeon to check on his head. While my son had 2 types of closures, the surgery was only to open one. The logic was that the sagittal was more critical and opening it up would cause the metopic closure to open up as well. But for two years, that theory was tested. We would go to an appointment and hear it was fine, but return three months later and hear he may need the second surgery after all. The last appointment in that bunch, we were told that it looked good for the time being and to come back in three years. I remember laughing as I made the appointment — mainly, because they asked me if a certain time on a date THREE YEARS in the future would be good for me — but also because it seemed so far away.
A few days ago, that three year appointment arrived. I wanted to remain hopeful, but couldn’t shake the dread in my stomach that we would be told he would need another surgery after all. My mind raced with scenarios of trying to explain this to him (see previous post about how I’m crazy), but I tried to think positive. When the doctor walked into the room and looked at my son, he said “If I had no knowledge of you beforehand and you came in the office today, I would have no idea why you were here.” He finished the quick exam, letting us know everything was good and that we did not need another appointment. EVER.
The surge of relief I felt after hearing that was gigantic. For years, I had in the back of my mind that until we get that sign-off, it was not all ok. I finally feel like we can step away from that episode in our lives.
There are some things that will serve as a reminder, like the scar he sports on his head, which we keep covered by his beautiful curly hair. I worry about having another baby, if this would happen again–we’re told that there is no increase in probability that it would, but I think it’s only natural to have that thought. And while there may not be an increased chance that a future child of mine could have this issue, there is the chance that my son’s children could. I’ve wondered if one day I’ll be a grandmother telling my son that it’ll be ok. It seems really silly to have those thoughts (again, see previous post about me being crazy). Even so, I can take a few odd thoughts versus the unknowing if we could put all this behind us finally.